I wish I were writing with better news, but unfortunately this update is… Simply speaking, a confirmation of my original prognosis. Osteosarcoma is a hard cancer. Metastatic osteosarcoma is very hard to survive for long, and I’ll not be surviving it much longer.
I could write about lymphedema, or radiation fibrosis, or nerve damage, or any of a myriad of incredibly difficult physical limitations I have now. Most pressing, I could write about the pleural effusion in my right lung, which we drain daily, and hasn’t stopped despite more than a month of treatment. About the many many things I can no longer do, down to taking a bath or walking without a walker. But I don’t find it all that interesting to roll through the unfortunate details of this situation. We’d hoped treatment would give me more time to be on this earth, but as it’s turned out, treatment has simply extended my time on treatment, and it’s getting harder and harder to withstand even the “easier” therapies. The heavy hitting chemos are off the table — I can’t withstand the side effects any longer — and keytruda, the immunotherapy I’ve been on the last few months — is not working. I have scans scheduled for this week to assess the growth of the cancer and to help my doctors decide if we can obtain an experimental targeted radiotherapy that could help, but it’s unclear whether we can even get the drugs fast enough and if they’ll help. I could also tell a dozen stories of incompetence and bureaucratic insanity and stonewalling that have delayed and delayed when we don’t have time for delays. But sadly, the many cruelties of our health care system have been well documented, and I don’t feel the need to relive them in the telling. I’m dreading the scans since simply lying flat for more than a few minutes is incredibly painful and makes it difficult to breath, and bloodwork this week showed my alkaline phosphatase — one measure of osteosarcoma’s progression — is through the roof. So we’re pretty sure of what the scans will show and the only question is how bad it will be.
I’m not on hospice yet, but we are focusing on spending time with close friends and family, and the time I do spend with them is likely to be the last. I can’t express how hard it is to type that. Not only for myself, but for my devoted and loving husband, my sweet sweet sister, and the many friends and family who have pulled for me, not just in this process, but throughout my long career of frantic social advocacy and public service. It’s stunning to me when I consider just how much support I’ve been blessed with throughout my life. It’s impossible to say thank you enough.
I don’t have a bucket list. I’m lucky to have lived my life exactly how I’ve wanted to. I’ve traveled, and visited wonderful places. I’ve worked my ass off as a lawyer advocating for those without the resources to do it on their own. I’ve worn lovely clothes and attended lavish parties and renovated an old house and planted fruit trees in my front yard. I’ve marched in the streets and protested wars and then worked to resettle refugees from those wars. I’ve performed in and produced circus shows, dangling from rigs and trees and spinning freely, joyously, through the air. I’ve hiked mountains and visited parks and camped and had the most wonderful, enjoyable, frustrating, interesting mishaps and relationships and adventures. What I want now is mostly just to rest and be in retirement. I don’t care about the Mueller report or the eighty democratic candidates. I’m tired.
I haven’t posted or written about this yet, because it’s just been too painful, but I also lost a beloved friend recently. Mary and I met through a Facebook support group when we’d both been in treatment around the same time. She’d been diagnosed a bit before me, but developed lung metastases later, and we lost her a month or so ago. We chatted almost every day, sharing everything and anything about treatment, complaining and sharing our fears and hopes and frustrations. There has been a significant part of me that’s jealous of her, in that we’d both been so afraid of the process of dying. Less of *being* dead — honestly, I’ve encountered few people who seem to fear that, but of the pain and fear of meeting death. I miss her desperately and it’s made it especially hard to push forward with treatment without my best buddy with me.
Among the many misconceptions and unrealistic expectations surrounding cancer is the idea that doctors “give you” however much time. People who live longer than an estimate will crow with triumph that the doctors gave them whatever time and they’re still alive. This seems unfair to doctors to me. If they do give an estimate, they’re simply trying to convey the statistical likelihood, given what they know, trying to let their patients plan and live according to a realistic expectation. It’s not something to beat. And of course, no one knows how a disease like this will progress. Sometimes it speeds up for no reason; sometimes it slows for no reason. Sometimes a metastasis is in a relatively safe spot; sometimes it’s in a bad spot. All of which to say that no one has given me a certain amount of time. Given what I know from friends and research, it could be weeks or months. Given how much of a struggle daily life is, it’s sometimes easier to manage the little things in the knowledge that it won’t actually last that long. Thankfully, my pain is well managed now and so although I’m frequently uncomfortable or frustrated, I’m rarely actually in distress. I feel as though I could sleep all day, and it’s difficult to motivate to get up and move around even for a few minutes.
If I don’t write again, please be good to yourselves and each other. If you feel moved to add to the many angels who have helped us avoid financial worries while going through this, my gofundme is here. One of the final lessons that I’ve learned is how to truly accept help, and it’s been hard but oh so worth it. Yours in ever expanding love,